The Advocacy Games

October 12, 2017

I’ve been invited to speak at an advocacy conference next week and have been asked to talk about the various aspects of Steven’s life where I have had to be his advocate. In preparing my talk, it’s brought home again that since transition to adult services, the areas where I’ve had to advocate are the very biggest stuff of life. The foundation stones to a normal human life.

Throughout 2010 to 2011, I had to advocate for Steven’s liberty. A fight to release him from unlawful detention, with the spectre of a life of institutionalism in the future should his liberty not be secured.

Then from 2012 to 2016, the fight was to get Steven a home. From being made homeless in 2012 (again unlawfully), until finding a home last year, the fight to be heard and for Steven’s needs to be respected was relentless.

And finally, from 2013 and ongoing, I have to advocate for Steven to get the right amount of funded support to enable him to live in his own home. Although the process is easier for me now, maintaining it is a very precarious venture. A change of social worker, a change to policy, an over officious direct payments manager can cause everything to come crashing down. It’s always unexpected so you have to be in your toes at all times.

Families are between a rock and a hard place when advocating for their children. Post 18, families are considered irrelevant and are actively excluded. Their input cannot be acknowledged because that exposes the void in services. From 2012 until the very last month of our homelessness adventure, the Local Authority did absolutely nothing in helping to find Steven a home. It left me to wander down the many blind alleys of private renting. Then I was left to navigate the labirynth mazes of the council housing bidding process. It would have been completely beyond Steven on his own: it was beyond me much of the time. It was taken for granted that I would do this but having got through the maze, I ended up dismissed as just a “live in carer” on the tenancy agreement.

The State sees families as a hindrance but relies on them totally for the stuff it is not prepared to do.

How much of the advocating that I do could Steven do for himself? The answer is a fair bit if the State was to view him as a human being. If the Local Authority had a genuine committment to human rights and the Mental Capacity Act, Steven’s voice may be a little more respected. Unfortunately we live in times where what should be positive legislation for learning disabled people is manipulated or ignored to serve the State’s hidden agenda. Lack of capacity is assumed; best interests decisions are contrived and violent repercussions are never far away for the learning disabled person who inadvertently exposes this.

Long time readers of this blog may remember the food recording story from Steven’s time in the Unit. The social worker had decided that I used food as a means of gaining Steven’s compliance. She kept boasting of how they’ve turned Steven’s diet around. I saw one of the logs and said to Steven, “Well done mate. You ate steak and broccoli last night”. He replied, “Just the steak. Threw the broccoli in the bin”. This honest answer from Steven had terrible repercussions. It exposed a lie: they recorded what they dished up, not what he ate. But because the lie couldn’t be admitted, Steven and I were severely punished for exposing it. The point of retelling the story is that revealing the kings new clothes of services is a tightrope that has to be precariously walked whenever there is some advocacy that needs doing. It’s horrid because it leads to full strength incongruence.

The truth is there are many areas of Steven’s life where he is capable of advocating for himself if he was afforded the respect of being listened to. Because he’s not, I have to step in. I’m rarely listened to either but I can play a tactical game that Steven wouldn’t be able to. I can study the law to firm up the ground I stand on.

So let’s give family advocates a bit of latitude. I don’t want credit. But I don’t want the lie that I’m irrelevant either.

Without me advocating out of love and duty, none of those three foundation stones of Steven’s life would be in place. Nobody from the State would be bothered.

Related

Yes, everything you have said, I can identify with 2010 until now and into the future our fight for the wellbeing of our son has been the very experience you have described! And one doesn’t have to follow too many stories to know that it is systemic!! 😡 My husband has nearly completed his O U law degree, not necessarily something he thought he’d be doing in his retirement but as you have pointed out without knowledge ‘the system’ can overwhelm you!

Mark so many people out here reading this blog, very very very agree with all you say here, and just cant be arsed commenting ?

Just too weary.

Cant be bothered to put a hand into their personal shipping container full of bollocks jargon, and ‘nothing’ meetings and nothing services; gallons spiced with mother and father blaming well seasoned with the lucrative (to others) snake oil miracle cure called – advocacy.

We know the power of honest empowering self advocacy. That with trust, and well nurtured hope.. our sons and daughters, can and will express their hurts and needs. It brightens lives; turn the light on for people who cannot do this for themselves.

Sensible, kind and competent advocacy rescues people from the very worst of neglect..

But in this current….. ‘if it moves sell it’, smelly Adult ‘care’ context…the advocacy king is bollocks naked.

And an army of very well rewarded people, who could and should behave differently…are voluntarily blind.

My son knows, has always known, where he can take his worries, concerns and joys. And it is not only to me, his mum, that he would take them.

But he has learned, from the same well paid people, to know …how to be very very careful where he puts his trust, far less his happiness.

Well said, Mark.
We all know the truth; professionals and services included.

Advocacy is best done by family who genuinely love the person. And although I’ve been an advocate for those who have no family, I always wondered what those who brought them into the world would have said – I hoped to speak for them.

My sons seriously learning disabled flat mate, (they have shared for 20 years or more) has depended on me to advocate. Flat mate has no one. Legal support has had to be repeatedly accessed for both flat mate and son.

I believe with foundation, that without my resilient and continuous advocacy for both, either or both could be dead

Weary mother, I know and you know.
You’re the advocate that will never walk away – that doesn’t just do set paid hours and is gone.

I hope I’ve got a better MDT now, but it took years of devastating loss to get .. just a bit of progress. The same progress could have happened in days.
Every end of year I look back and think how it could have been a wonderful year. I can’t look at Christmas things already in the shops as end of year brings everything into focus. What I should have done, and didn’t, what can never be undone, how I can carry on, what I must do now.
Losing the fear and talking openly is helping me.